Month: March 2017

(Ok, it really starts tomorrow, but I’m already looking over the horizon in weary resignation.)

Last April was my first time writing about this phenomenon, as it was my first time experiencing it…well, no, not my first time as an autistic person, because I’d been that all along. But it was my first time knowing that I was autistic, knowing that I was one of the people the world was allegedly being made aware of.

Did all that awareness work? It hadn’t up to that point; as I wrote last year, all of the previous “awareness” months hadn’t made me aware that I was autistic, so clearly the type of “awareness” being spread was not so helpful in that regard. From the generally baffled and surprised reaction I’ve gotten from people as I’ve started to tell them I was autistic, it hasn’t helped them become more aware, either. And my continued exposure to mainstream impressions of autism hasn’t convinced me that awareness is growing on a larger scale, either.

So I’m with those who say we don’t need any more of that type of awareness. But we do still need more real awareness — the kind of awareness that comes when we listen to what autistic people have to say about autism. We need the kind of awareness that counters the fear-mongering approach of groups like Autism Speaks, the kind of awareness that would help people like me realize we’re on the spectrum, and help the people around us to understand how we see the world.

I am also with those who say that beyond Autism Awareness, we need Autism Acceptance. It isn’t enough to be “aware” of autism if that awareness leads you to rail against it and treat it as a great burden on society that needs to be cured. Although I would hope that true awareness would not lead in this direction, acceptance is still another step beyond awareness. As Shannon Des Roches Rosa has written, “Awareness is passive. Acceptance is a choice.”

So should we rename April to be Autism Acceptance Month? It would be an improvement, I think, and I fully support those who do so. But I also think we can go another step further, and call it Autism Appreciation Month.

Because just as we need more than awareness, we need more than acceptance. Acceptance can manifest in very positive ways, but it can also manifest in ways that involve one group “putting up with” another group as an act of charity. “I accept your many flaws and love you anyway” is sometimes the vibe I get from that sort of thing. (Not always, but often enough to raise my hackles.) Appreciation, though, requires recognition of our strengths as well as our struggles, of our gifts as well as our “deficits.”

Can we as a society come to appreciate the benefits bestowed by our sensitive autistic senses, our iconoclastic honesty, our deep love of our interests? Can we celebrate the physical and emotional expression embodied in spinning, bouncing, flapping, or rocking? Instead of grudgingly making accommodations, can we learn that making workplaces and public environments more comfortable for autistics makes them more comfortable for everyone, and actually thank autistics for pointing out the problems?

That’s what we really need: a true celebration of our differences, and recognition of how those differences can be a positive force in the world. But I think that’s going to take a little more than one month to achieve.

(When I put it in caps like that, I feel like a Terry Pratchett character — which isn’t a bad way to live a life, frankly.)

I mentioned last month that I was considering going back to school, in a totally different field compared to my bachelor’s degree, but I didn’t explain what that new field was going to be. That was partly because I was still weighing some options, but also because I was still mulling over this whole course of action, thinking about what it would be like. But as I said above, I have been Taking Steps. I have enrolled at my local community college. I have transferred credits from my bachelor’s degree. I have taken placement tests in math and English. I am getting ready to select (and meet with) an advisor. I have picked out classes for the fall (and am getting really excited about them). So I guess I’m doing this.

But what am I doing, you may ask? I am getting ready to start studying in the field of human services, with an eye toward working — in some capacity — with other autistic people in a supportive role. That may eventually lead to a master’s in social work and clinical certification, or it may lead in some other direction; I’m not sure yet. All I know is that something needs to change in the way that autism is seen by those in the helping professions, and I want to be part of that change.

I want to help older adults learn to make sense of a late-life diagnosis. I want to help younger adults transition into independent living. I want to help autistic children and their parents understand that children on the spectrum learn and grow, and they can do so in ways that honor their differences instead of erasing them. And I want to help educate teachers, doctors, therapists, and other professionals to understand what autistic people need…and what we don’t.

Now, I am also Taking Steps toward doing what I can without a formal education in the field, but the education piece feels very important to me. It’s not just about getting a piece of paper that other people will respect, but about learning more about how to be a good source of support. A combination of study and practice seems a good way to do that.

I’ve been getting a few glimpses lately of emotional issues that are resurfacing long after I thought I had dealt with them. This has led to some interesting thoughts (well, interesting to me; you can be your own judge after you read them).

Because I often don’t know what I’m feeling — at least not right away — I also don’t know how much emotional baggage is piling up from the events I experience. This has two parts to it, really: 1) it can take me a long time to realize how much of an impact something has had on me, and 2) even when I realize that, I forget that the event was having that impact the whole time I didn’t know about it. What I’m realizing now is that #2 is an even bigger factor than #1 when it comes to my long-term mental and emotional health.

Of course, #1 has layers to it as well. Even when I do recognize an immediate impact, for example, I don’t always realize the full extent of it until much later. For example, I got divorced from my first husband many years ago. This was obviously an emotional event, and I got emotional about it — but it took me many years to realize just how deeply it had affected me, especially when it came to my sense of self and my worthiness to be loved. I absorbed a deep sense of “not okayness” from that event, which has taken a long time to come to the surface.

Other things in my life have had similar delayed impact, sometimes decades delayed. But the thing that I realized with #2 is that delayed impacts aren’t really delayed; it would be more accurate to say they’re unconscious and therefore invisible. So I wonder if one reason things get harder for autistics as we get older — often leading to burnout — is that we accumulate more and more baggage we don’t know how to process. In fact, it’s baggage we may not even know that we’re still carrying, so we don’t know that it even needs to be processed. Of course it piles up.

Yesterday, I attended the AANE (Asperger/Autism Network) 2017 Spring Conference, which was titled Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles. It seemed primarily geared toward professionals working with people on the autism spectrum, but two of the keynote speakers were autistic women, and there were quite a few of us in the audience as well.

VoxVisual wrote up an excellent recap at her blog already, which is great, because I am still too wiped out to be that organized. <grin> And honestly, I don’t know that I would have too much to add when it comes to describing the speakers, the venue, and the overall experience. So go read her summary, if you want to get an idea of what the conference was about.

(And yay, we got to meet! 🙂 That was really cool, even if we had to postpone dinner plans due to exhaustion.)

But while I don’t want to duplicate her efforts in recapping the conference, I do want to write about my subjective experience of planning for, getting to, and physically attending it. First of all, I was selected to read an essay I had submitted, as one of six personal accounts of being a woman on the autism spectrum. (You can read that essay here, if you like.) So even before conference day, I was interacting with the organizers to polish up my essay and make sure I was ready to present it. The volunteers I emailed and talked with were very good about setting expectations and answering all of my questions — clearly they (as women on the spectrum themselves) were aware of some of the anxieties that might arise.

The week before the conference day, I made sure to print out all of the information I would need — directions, schedule, a clean copy of my essay to read — and make a checklist of other things I would need to bring. I wanted to bring plenty of water, for example, and I would be bringing my own lunch. Lunch was included in the conference registration, but having recently cut wheat out of my diet, I was concerned about the gluten content of the sandwiches offered. Besides, I figured the day would be stressful enough without subjecting my body to unfamiliar food (which doesn’t always agree with me).

Google Maps told me the drive would be about two hours each way, but I would be driving in toward Boston (and back out again) around rush hour, so I gave myself extra time. It ended up taking me about 2 1/2 hours each direction; I left home around 6 am and got to the conference center (after parking and making my way through several wings of the hospital building) a little after 8:30. The first speaker didn’t start until 9, so that was perfect.

Check-in was easy, but walking into a large crowd of people outside the venue was disorienting. And it wasn’t just the people: there were tables with food and coffee, other tables with pamphlets and fliers for the organizations who put together the conference, and too many other things to look at. So I went in to find my seat; at least I knew I was supposed to sit down in the front, and when I got there someone recognized my name tag and directed me to a seat.

Since I was early, though, I stood back up to see if I could find Vox. We had told each other what we would be wearing, and shown each other pictures, so this turned out to be easy. 🙂 I felt like we immediately clicked, and spent the rest of the time before 9 chatting about several different things. (As would come up later at lunch, with some other women, socializing with other Aspies/autistics can be soooo much easier!)

I went back to my seat just before 9, where I met a couple of the organizers and some of the other speakers. I felt a little exposed sitting in the front row, right in front of the podium where most of the speakers would be standing (and therefore where the camera for the live-stream would be pointed). This didn’t become evident until the second speaker, though, because the first was himself being live-streamed from the UK. Being in the front row also meant I was looking up most of the time in order to see the slides, or up at a different angle to look at the speakers’ faces. The venue was fairly bright, too, and sometimes the sound was too loud, while other times it was too quiet.

By the noon lunch break, I had finished all of my water (I was very warm for most of the day, as well) and was developing a low-level tension headache. My neck and shoulders were tight, something that had crept up on me without my really noticing it. I think it was all of the ambient noise from the crowd — people turning pages as they followed along with the speakers in their printed slide packets, occasional whispered conversations, people moving around. These are the same sorts of things that had stressed me out while working in an open-plan office, things I didn’t even consciously notice until I learned I was autistic and tried wearing noise-canceling headphones. I guess I still don’t notice them until they’ve built up into tension and pain.

(As an aside, it was interesting to read Vox’s observations of the reactions from the audience, and what things seemed to surprise or interest — or upset — them. Since I was in the front row, I didn’t get a perspective on that.)

Lunch conversation was great, and it was good to get some food. (I also snagged some more water.) It probably wasn’t the best idea when I suggested we seek out a table in the larger hospital cafeteria to eat — it was busy, and sometimes hard to hear each other over the dull roar — but it wasn’t clear where else we could have settled down to eat. The rooms near the conference venue were already pretty full by the time we all got our food.

Settling back down for the afternoon, I was already pretty fried. As I mentioned earlier, I was really warm during most of the day. It was a very cold day, but I thought I had dressed in a way that struck a balance between keeping warm outside and not being too bundled up inside. Apparently I should have worn something a little lighter. It also didn’t help that I was scheduled to present my essay in the mid-afternoon, so I had most of the day to be nervous in anticipation of that. My nerves weren’t too bad in the morning, but during Liane Holliday Willey’s talk after lunch, it was all I could think about.

I also felt like my voice was going to be hoarse from all the talking over lunch and during breaks — but I didn’t want to drink too much water before I had to talk, because I hate the feeling of having to pee while trying to focus on something else. So I decided it was probably for the best for my mouth to be a little dry; it would probably help my voice sound a little clearer than if I had too much moisture.

(Seriously, these are the logistical practicalities that run through my head all the time. All. The. Time.)

In the end, I was very happy with the way my presentation went. My knees were shaking, but my voice wasn’t, and I had a podium on which to steady my hands. After I was done, I was very happy to be sitting in the front row, because I only had a few steps to walk before I was back at my seat and out of the public eye. And I definitely felt my shoulders relax — though not completely — when it was over.

Maybe because of that feeling of finally-now-I-can-relax, I kind of floated through the last talk of the day. It also was a bit less relevant for me, as it related more to parenthood, but I did enjoy some aspects of it. Mostly I was just getting hit by the cumulative weight of all of the sensory input of the venue, the social interactions during lunch and breaks, and the cognitive processing of listening to all of the talks, as well as all of the logistical planning required to navigate through the day. I managed to have a few more — really excellent, I have to say — interactions after the event was over, but yeah, I was very much done.

My brain was foggy with all of that by the time I left, and I still had a 2 1/2 hour drive home — over half of it in the dark. At least in this direction I was leaving the city traffic behind, and most of the night driving was on familiar terrain. I had listened to an audiobook on the way in, but by evening I was talked out and needed music. So I put all of my Dar Williams albums on shuffle and sang along with her for the whole way home. 🙂

Overall, this was a great day, and I enjoyed the conference immensely. While I think there may have been some ways in which the venue might have been improved as far as sensory issues — Vox mentioned several in her post — I also feel like a lot of the things that eventually wore me out were just…going to wear me out. I also think I might have been better off sitting somewhere in the back for the morning, and only down in front during the talk right before my presentation. I would have felt a bit less “on display” and also would have been farther away from the epicenter of all the light and sound.

I feel like there is so much more to say — for example, I really, really enjoyed listening to the keynote speakers and the other first-person accounts, and think they provided a lot of good information and perspective, especially to those in the audience who weren’t on the spectrum. But I wanted to write this up as an example of how…involved it can be to attend something like this as an autistic person. And now I’m going to enjoy a nice quiet weekend to unwind, because I can. 🙂

I was very honored to present this essay yesterday as one of six personal accounts selected to be read at the AANE Spring 2017 Conference, which was titled Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles.

I have never fit in.

I’m not entirely sure I fit in here, at a conference about women on the autism spectrum. I’ve never fully identified as a woman, and I found out only a year and a half ago that I’m on the autism spectrum. So trying to tell my story as an autistic woman almost feels revisionist, even when I’m telling the absolute truth.

I grew up not knowing why I didn’t fit in. I was just too weird, my viewpoint and sense of humor incomprehensible. Academically, I was “too smart”; socially, I was mocked for my naiveté, teased for my way of speaking, bullied for my shyness. I was seen as a girl, but I didn’t think like the other girls. As a teenager, martial arts classes gave me confidence, but I still felt out of place. In the classroom, I could hear every fidgeting student, every scrape of chairs on linoleum, the high-pitched whine of every piece of old equipment — but I was able to get past all that if I kept my head down and studied. I loved to learn, and I did well, graduating at the top of my class.

My love of science carried me to MIT to study physics, paid for by an Air Force ROTC scholarship. For a few short weeks I felt I belonged; here was a place where science was cool, people worked hard, and geeky jokes were appreciated. But it was hard, and it wasn’t long before I felt overwhelmed and alienated again. It wasn’t just the academics that were hard; it was also the social stress of living surrounded by other people, the extensive planning and prepping to keep executive functioning on track, the frequent sensory overload. Somehow I made it through, but I graduated feeling wrung out, bitter, and undeserving of my degree.

Thanks to the Air Force, I had a job for at least the next four years. I got to do some technical work and learn new skills — and at least in the military, expectations are usually made explicit, social interactions are fairly regimented, and you always know what you’re expected to wear. Not being traditionally “feminine” is not unusual for a woman in the military, either. There is a lot of uncertainty, however, in knowing you have so little control over your own career, or even your own life: even in those (relatively) peaceful years, I could not say where I would be stationed next.

So I opted to leave when the four years were up. I moved back to the Boston area, got a job at a tech company, got married and bought a house. It was a lot of change over a short period of time, but I was making my own choices. I had friends. I earned my black belt and began teaching at and even helping to run the martial arts studio I attended. It was a busy four years leading up to my thirtieth birthday, during which — first slowly, then more rapidly — I began to hit a wall.

Some people call it autistic burnout: the point at which all the energy and effort you’ve put into keeping it together, managing executive functioning and sensory overload…just runs out. I couldn’t do it anymore. Full-time work, martial arts training and teaching, keeping the house clean, making time for my husband — I just couldn’t do it.

Perhaps unsurprisingly, my first marriage fell apart around this time. My lack of specific gender had always been with me; among other things, it led to close friendships with men as well as women, and to the certain knowledge that I did not want children. These were things my husband knew about me from the start, but they ended up as deal breakers anyway. Looking back, I’m sure my burnout played a role, too, as well as my persistent inability to explain how I was feeling, or to understand his arguments when I found them irrational.

All this time, I still didn’t know I was autistic. I just thought I was a failure, despite all I had accomplished. I held onto my tech job for another year or two, dropping down to part time and hating it more and more. During this time, however, I also grew close to a friend from the martial arts studio, and eventually we decided to move to a rural area and start over on our own terms.

That was twelve years ago. He and I are married now, and live in a beautiful house in the woods. We have struggled for money at times, but did so because we prioritized creativity and happiness over working long hours for other people. When I learned, at the age of 43, that I am autistic, I was overjoyed. Suddenly everything made sense. I started to see my life as a series of triumphs over struggle, rather than a lifelong failure to be “normal.”

I now work part-time — from home! — for a software testing company that seeks to employ people on the spectrum. This leaves time for several creative pursuits and areas of independent study. I still struggle with anxiety and depression, but as I learn to be my authentic, autistic self, I find new ways to manage that. While I didn’t know it for most of my life, autism has helped make me who I am. I wouldn’t want to be anyone else.